My Double Lung Transplant

Tuesday, January 29, 2008

Stupid Fucking Technology Fuck!

Stupid fucking technology!!!!!!!!!!!!!!!!!!!

AHHHHHHHHH! Sometimes I wish i had a laptop so i could pick it up and throw it. GRRRRRRRRRRRR.


You may recall how my computer had to be rebuilt in December bc of some 'massive virus'? No - not 'some massive virus''s more like, 'some stupid fucking shit load of invasive viruses'.

Well...I thought all was fine and dandy. I truely did. I thought I could forever skip merrily along, hand in hand with Dell, with the notion that everything was perfectly fine once again. I thought we could live in harmony and slowly, my trust for all things Computer would be rebuitl.

Welp friends, I was wrong. Guess who's computer has another stupid fucking massive BUNCH of viruses?


It decided to be a shit head Saturday, as I was about to write my 5 page article review. It started shutting off and all its stupid shit and it kept it up for a couple of days. Then it got slower and slower and I wanted to shoot it. So i made my dad take it into Staples where i've recieved word that they can Tune it up which would do nothing, or 'wipe out' my computer, and re-install Windows. Backing up files would be an additional $80, and frankly, it's not worth the small amount of files i have (since after the first crash i backed all my pics up) and had no school assignments up. Right now, I have some readings from my DE course and pictures that will forever be lost. I am most distraught.

I am most upset about the picture I have of my dog Casey. He's old and I got a really good picture of him Boxing Day. He looks precious and perfect and I really treasured that picture....but I never put it on facebook or sent it to anyone...and it is forever lost:(

Techbology sucks sometimes.

Send love please.

Broken hearted,

Sunday, January 27, 2008

Up in Heaven

What are you doing today
Up in Heaven?
Where the pain is gone
And the skies are blue
And the sun it always shines

What are you doing today
Up in Heaven?
On this day that you left
And the world seemed to end

What are you doing today?
On this day of reflection
As your friends try not to mourn

We miss you a lot and still wish you were here
But we know that you're safe
Up in Heaven.

Karyn. You left 4 years today. The skies opened up and took you away to a better place so you could watch over everyone else. It's weird for us. I can't beleive it's been 4 years. Where does 4 years go? Where does it?

Tara and I went to see you today. We went to your grave and met Jess there. Your mum was there and it was nice. But we still miss you.

I never thought i'd be writing this 4 years ago.
And you'd be up in heaven.

We miss you, dear friend,

Friday, January 25, 2008

They Called

They called.

About being listed.

And I missed it.


Fucking idiot...right here <--

So i sat around all day and the phone never rang...not once not ever. Even my dad didn't come home for lunch nor did he let me know about his absense prior to me making our daily sandwich. Around 2ish i got an email from my mum saying that my dad had been trying to call all day and that it went straight to voice mail. She said to go downstairs to check the phone, and I did.

I got downstairs and sure enough the phone was off the hook from when I checked for calls today. It wasn't majorly off the hook but just enough that no calls came through. It also didn't do that annoying beeping sound it tends to when it's off.

There were 3 messages.

1 from my dad saying he woulnd't be here for lunch; one was a hang up; and the third was my tx co-ordinator from the hosp saying she had my results from my evaluation.

My heart raced. My armpits started to sweat. Suddenly, i noticed I had a toothpaste stain on my shirt. With scribbly writing I wrote the hosp number down and called them. No one answered. I figured it was a friday and they prob went home early. Nonetheless I left a msg anyway saying I was home and to call back.

5 minutes later the phone rang and i grabbed for it. My heart started beating fast again but i didn't wanna seem like i was waiting around for the call.

She said everything was 'acceptable' for being listed...buuuuuuut it may be a little early. *heart sinks*. However! They will schedule an appt to come back in 2-3 months to see if I am ready to be listed then! YAY! Initially, I thought i'd have to come back 6 months to a year so i was elated to hear this!

If you think of it....2-3 months is March/April. That's not bad at all. It will give me time to finish the school year so if i DO get listed, i won't miss school! Granted, I won't be able to work full time but that's ok! Generally, I feel my shittiest in March and April so hopefully i will be ready!

In the mean time, I was informed that my respirologist will be instructed to set-up pulmonary rehab for me locally. Now i know sometimes, you need to do this kind of as a pre-req to being listed. I can handle that. I have no choice but to accept this.

So there is the news. Yes, I am slighty gutted/sad...but at the same time I knew the answer was most likely this. Hopefully in 2-3 months time...i will be listed and on my way to breathing again!

Laters my lovelies!

And suddenly...the world stopped.

Things have happened lately.

Friends have gotten lungs; friends are losing lungs; and others are waiting. Some, are waiting longer than others. One person whose blog I've read, has been waiting for 3 years. 3 years! What's right about that? Nothing.

My friend Q got lungs in October. He had a good recovery. Sure, he had setbacks that required additional surgeries; but his lungs were good...until now. It seems over night he's lost over a litre of function. What's right about that? Again: nothing.

Alice got her lungs on the 22nd after a long wait. So far she is doing good, and I hope she continues on this trend. I have not checked her blog yet so I don't know of any new updates. I read this morning and it said she was awake but still on the vent. I hope soon she's off and breathing with her new lungs.

Then there are those who are waiting: waiting to be listed, like me and Karen; waiting for the call like Kayla or Nicola. The whole thing seems like a waiting game and it really sucks. It's hard to not get down about things, especially when things go wrong and you don't get the news you want. But that's life. Life and shit happens; and sometimes in life, you get shit on.

It's not fun when you can't breathe. Everything is 100x harder. Everything takes 100x more effort to do. Everything leaves you tired and without motivation. It makes you irritated and not fun to be around. You feel listless and deprived of a lot of things. It makes you look at the people who have 'nothing' wrong - their life seeminly couldn't be more perfect. Sure, I bet they have their shit happen, but they're still breathing. You're lucky there. You don't know what it's like to struggle to truely breathe until it's taken away. Those who have had tx tell me it's easy and something you can't ever imagine.


It makes me think back to when I could breathe. When I was just like everyone else and I never thought twice about it. And then I got sick.

And suddenly...the world stopped.

Wednesday, January 23, 2008

Party like a Rockstar...Party like a Rock...

Welp, first things first!

Alice has a new set of lungs!

Heath Ledger died:( (mourns)

And I'm still waiting.

So...Alice, Alice, Alice you ask? She's doing great! I just read her blog (which her sister is so kindly updating) and Alice is still sedated but should be coming off of it soon! The lungs fit perfectly and so far, she is in perfect condition! Yay Alice! I will admit I will miss sitting on MSN talking to you about how shitty we feel and how it sucks being hooked up to O2 all the time, and how people can be bastards, but at the same time, I AM SO SO EXCITED FOR YOU! I cannot wait till you return and you can BREEEEEEEEATHE! I've heard it's easy. I can't wait to experience it myself!

Also, Heath Ledger died. Holy fucking shit! That was shocking! Yesterday a lot of things happened that will forever stay in my memory: as always, it was Karyn's birthday and she would have been 22; Alice got her lungs; Heath Ledger DIED; and also, the first Bowing 747 took flight in 1970 (or something). Who knew January 22nd marked so many occasions? I'm baffled.

So alas, I sit here, waiting. Still no word from the hosp about whether or not I will be listed yet. To be honest, I'm quite jealous of all my tx friends b/c it seems like everyone is getting lungs left, right and center, and pretty soon I'll have no one left and will be all alone. Sure, there's Kayla, but sometimes you need more than 1 person! Oh well - irregardless of the matter my jealousy is greatly outshone (sp?) by my joy for these people!

School is busy. I have a paper and an exam next week (already? YES ALREADY!). I also have to post for my online Sexuality course. Oy *sigh*. What else is going on with me? Nothing. It's freezing. The last couple of days were in the -20's (no joke) and it's been frigid. Yesterday my bus never came so I waited after class and froze. I came home out of breath and very angry.

Spring time, come soon!

That's all for now peeps. I must return to my online readings.

Monday, January 21, 2008

Omg Omg Omg Omg

Omg Omg Omg Omg.




Ok. Ok. Ok.

*sucks on O2*

Let me begin! As linked yesterday, Alice just informed me that SHE GOT THE CALL FOR LUNGS! AHH! I'm so excited for you Alice and I hope it's the real thing!

If you didn't check out the link to Alice's blog (which is rude if you didn't!, Alice is all the way over in South Africa and has been waiting for lungs for 9 months. The system in South Africa is very different than it is here in Canada and the US. Alice was actually going to head to the tx center in Florida next month, b/c another woman from South Africa was waiting in Fla for lungs....however, if this woman didn't get the call by Feb, she was going to go back to SA and resume her wait there. By returning to SA, it means Alice could fly to Fla and wait for lungs instead!

Ironically, just today Alice told me that the SA woman in Fla got lungs last night and was uber bummed. This meant that Alice going to Fla was most like a no-go. She even sent an email to TGH to see if they'd take a foreigner. But luckily enough, ALICE GOT THE CALL TODAY! She sent the msg to me on MSN at 8:54pm my time (eastern) which means she got the call at 3:54am South African time.

YAY ALICE! I am so so so happy for you and I hope and pray this is the real thing! You deserve it girl!!! I await your return!!!


Sunday, January 20, 2008

Stupid Questions....

There are stupid questions, and then there are stupid fucking questions. Today, for a good portion of this blog, I am going to focus on the stupid fucking questions that I've been asked regarding transplant. Hopefully, you people who have had tx, and for those of you who are waiting, can relate and get a laugh. This was brought to my attention upon having a conversation with Alice, who's a world away in South Africa waiting for a tx herself. Her blog can be read here:
And so we begin:

Stupid Fucking Question #1:
"Why are you out of breath? You must be out of shape..."

This question usually comes from some ignoramous who KNOWS that you need a tx and are in general overall poor respiratory health. These people must be kicked and punched and scratched upon asking.

Stupid Fucking Question #2:
"THAT makes you out of breath!?!"

Yes. Yes it does. In fact - EVERYTHING makes me out of breath so shut the fuck up and let me sit. By asking me such a question when I clearly can't breathe is only going to make the situation worse. So do me a favour and go away so I can die alone on the steps temporarily.

Stupid Fucking Question #3:
"Ugh...Smokers cough."

Yes, you're absoluetly right. I'm 22 years old and have already acquired smoker's cough. Thanks for the observation. Enjoy your time burning in hell.

Stupid Fucking Question #4:
" When's your transplant gonna be?"

If i knew that, I wouldn't be sitting here. Fucker.

Stupid Fucking Question #5:
" Who's your transplant going to be from/Do you know the donor?"

Honestly? HONESTLY!? How fucking stupid can you be? The answer is 'no and no'. This is a dumb question which doesn't need justification. It's just fucking stupid.

And so we have a list of 5 stupid fucking questions that I've been asked on countless occasions. I can happily report I'm not the only one who's gotten these. There are more questions I've been asked, such as, upon hearing me cough, "Oh...I've had that" and "Are you sick again", as well as, "Can you breathe w/o your oxygen on?" but...when you're as dumb as these people.....they don't warrant being given anymore attention then I've paid to them already. I even had a prof ask me when my transplant would be, and when i informed her i didn't know b/c someone had to die, she looked at me like I had kicked her up her uterus.

Don't get me wrong, you can't blame some people for just being ignorant and stupid. I know people don't live, eat, and breathe transplant the way I have to, so I can understand to an extent. But asking someone when they're going to be getting a transplant is kind of like asking a healthy person when they're going to have a heart attack in the future (if they even do). The answer is: I simply don't know.

Also, to add to this already long blog, I had a visit from Karyn lastnight in my dream. Today is 4 years exactly that she had her aneurysm and car accident. It was the last time that I ever spoke to her. Actually, as I look at the clock right now, this was the exact time of our last conversation. I am not overwhelmed with saddess the way I used to be. It's kind of bittersweet. In my dream, me, Krystal, Tara, and Jess were sitting around talking about Karyn. For some reason I was really emotional and crying hysterically. Then, Karyn's mum let us inside and we went to her room. On her bed was a brand new pic of her that I had never seen before. It was one of those Harry Potter like pictures where the ppl in it are moving and interacting. Well Karyn was smiling and waving and pointing at us. Then, she started writing something on the frame.

In black writing, she had written: "I miss you guys".

And with that, she smiled, and turned, and I woke up.

Again I was overcome with the same feeling that I get when I've had dreams about her before. They're different from regular dreams when you KNOW you're dreaming. You can actually feel that someone was there. It was amazing.

And with that chickies, I must close this long blog! Hope you're warm - it's a cold nasty bitch outside!


Friday, January 18, 2008

Transplant Fears (dun dun dun)

Firstly, no word from Transplantland yet.

Second, lets talk about my transplant fears, shall we? Great. I'll go first.

Transplant Fear #1:
Getting fat. Truely. I'm terrified of Prednisone b/c of what it did to me the last time I was on it. I blew up. I looked like a monster. I had terrible, terrible moonface. I had to go to PROM bloated with terrible, swollen moonface b/c i had gotten off prednisone and for me, it took EONS to leave my system. I hate it. I hate it. I hate it. I hate it. I know I will prob have to be on it, so lets hope it's a small dose. I'm superficial; i know. So shut up.

Transplant Fear #2:
Getting a job. I'm going to have to live, which means I have to plan my future. That's scary! It's normal - I've never been normal. So i'm scared of it. I hope i can get a good job and afford a house. I hope. I hope.

What else am I scared of? Not much, which I guess is good. I'm terrified I'm not going to be able to find a good job once I'm all fixed and better. But I guess that's better than worrying about other shit But what in the hell will i do with a degree in Anthropology? Work in a museum? I dunno....I really don't. For now, I'm working on graduating. Oh yeah, and doing homework, which I should probably get back to.

I took a break to bake brownies.

Oh me. Oh my. What will we do with ourselves? I guess we'll just sleep I guess. That's ok with me.

Thursday, January 17, 2008


Still no news from the hosp. I shall wait and that is ok.

It's colder than ever here right now. Apparently we're squashed between 2 storms and it's supposed to get messy. I have a lot of hw to do and it really sucks. I'm also really phlegmy but what else is new. I don't have much to post but felt an update was due....I guess.

I have to mention this though, for Katey: thank you for following my demanding order in the Bullring yesterday, as i forced to you turn around ("look in your pocket!") and stare at the girl behind us with the mysterious line across her forhead.

Over and out.

Sunday, January 13, 2008


Babies babies everywhere!

(Image courtesy of Pink is the New Blog

Lately it seems that everyone is exploding babies. Friday, Nicole Richie and Joel Madden had their little baby girl, Harlow Winter Kate Madden (that's a mouthful - but a cute one) and then yesterday Christina Aguliera birthed her child with Jordan Bratman, a son, Max Liron Bratman. Congradulations to you both, by the way. It's not that I know either of you, b/c i clearly don't, but it's still exciting. Let's hope these are people who won't go crazy and wear their wedding dresses while car shopping like a certain pop-star of yesterday *coughBRITNEYSPEARScough*

All this baby birthing honestly makes me wanna have one or something....just to say that I did. That way, even though I don't know these people, my kid would still have the same birthday as theirs and would therefore be kinda famous.

Which begs to ask the question: who's left? Well...we have Halle Berry, J-Lo (who's allegedly spawning twins with that narsty arse Mark Anthony *barf*) Jessica Alba isn't due to till the spring or something and.....oh yeah, Jamie-Lynn Spears, who aparently is more like 6 months pregnant than 3 or something? Crazy!
Nonetheless....I felt it was necessary to mark such thing since 2008 seems to be shaping up to be the Year of the Baby. After all, it is the new trend you know!

Saturday, January 12, 2008

Hey Hey, It's Saturday

Well today I lounged around like a lazy cow. Well, actually, that's a lie. I made homemade mushroom soup, which was fantastic except for the fact that I don't like mushrooms. It was easy to make except I was thrown for a loop when i had to puree the mushrooms and the broth in a blender and the lid blew off twice. It spewed chunky soup bits all over the floor and on my dogs, but nonetheless, not much escaped and it was a good soup overall. Bravo, moi. I also went to the bank to put in a huge gob of money but I still feel like a poor university student. Oh well, thank god i'm frugal.

Lastnight I baked peanut blossoms which were fantastic and most of them have been consumed. It's essentially peanut butter cookies and when u take them out of the oven you put a hurshey's kiss in the center(for those not in the know - pft).

I am not feeling too bad. A bit chesty but no portion of my lungs has been coughed up (yet). I'm not feeling fantastic either though, but then again, when do I?

Would you like to hear a bizarre story? Of course you do. So sit down. I went to high school with a ton of people. It turns out, someone I went to HS with had CF. Turns out also, that she's been waiting for a double lung tx. Oddly enough, I found this out through my sister, whose boyfriends sister is friends with this person. Are you following? Well, I hunted this person down on facebook and we've been talking for a bit. She got listed at the end of Oct/beginning of Nov and I am happy to announce that yesterday she got her transplant! I am so happy for her and if you could send good vibes, karma, or prayers to her (sarah) i'm very sure she'd appreciate it!

Also, I still not have heard from the hosp in regards to being listed, but if you could also say a prayer that i DO get listed, I would love you forever.

I'd also probably bake you cookies and mail them to you.
Cheers/Skal (thats for you Krystal!)

Wednesday, January 9, 2008

Just another January Day.... in la la land.

I was awoken with a start today at roughly 5am and then 9am. Evidently it was storming outside pretty hard. I opened my window and what to my wandering eyes appeared but tree branches and garbage thrashing and blowing near! It was windy as wind could be, with gusts exceeding 100km/h. My mum said the wind 'stopped' her outside today, and advised me that it was wise and fortunate on my part that I did not have class today and that I wasn't wondering/blowing about aimlessly. True enough, my adventures outside did not extend past the back deck for fear that I would blow away.

I can only say that whenever we have wind storms (which is quite frequent around the Great Lakes) that my huge, ever-regurgetated (sp?) fear is that I might actually blow away. I mean, the wind takes my breath away literally when I step outside....but i couldn't imagine actually blowing away. I'm sure it would probably happen though as I have been pushed by the wind before. I guess we'll see.

I am here to also announce that my last post was a lie. While it was my full intent to actually do hw, I failed to do so and as a result I sit here having accomplished nothing. I can't get into the swing of things just yet. It all seems so overwhelming. For my online class alone this week I have 4 things to read. FOUR THINGS? WHAT THE FUCK? Give me a goddamn break, academia! Needless to say this is not motivating me any harder to get shit done. I am just going to sit here and doddle.

As thinks we may be getting sick. I'm not sure...I hope it's not the kind of sickness that sneaks up and slowly takes over. If i'm gonna get sick, just let me know and hit me full force....don't fucking sneak up and have me realize i'm sick when it's obviously too late. You know? I've been questioning if I've been getting sick for a while now and it's hard to tell. You're probably wondering how one could not know if they're sick or not. Well let me tell you: when you generally feel like shit all the time, cough up phlegm and cough on a daily the event that sickness does descend upon may be slow to pick up on sudden changes. Yes i have been coughing a little bit more...but what i cough up is 'healthy' in colour. So who knows....maybe I need to wait till i cough up blood or something? I dunno....should i know?!?

Life is confusing. Recently I've broken 3 nails. My thumb and my two middle fingers. I broke my thumb bowling the other night and my 2 middle fingers playing the piano. I was banging away playing Evanescence and writing my own song obsessively and looky looky my nail broke and now i'm mad. Interestingly enough, Zoey - my precious soon-to-be-morbidly-obese cat, loves to watch me play. She walks up and down the keys and sits down and watches as i play. She sits her fat ass down and takes up a good 2 octives, greatly hindering my ability to melodically branch out as i play.

Ugh. I don't have anything interesting to blog about. And for that, I'm sorry.

Monday, January 7, 2008

Good for Me

Good for me! Good for me! Good for me!

Alas, it's back-to-school week for the winter semester and here i am, like a ripe old peach, doing my online readings for my distance ed course. What a champ, i know!

Who knows how much of this semester I will be able to do. If i get listed, I have to take a leave, if not, then i stay, and if i don't get on top of things than I am fucked. And fucked I am determined not to be! So here I sit, reading about sexuality in the late-Victorian era. Fancy-schmancy.

Everytime the phone rings long distance I jump. Could it be the hospital telling me my fate? I am so antsy it's rediculous. It also makes my stomach bubble with excitment though. This could be it! AHHHHHHHHHHHH!!!!! And i scream internally like a hollow shell of some sort.

Wow. How crazy has this been? I almost need to step back and survey myself. Hey, if they don't list me, it's b/c it's too early and that's ok. I'm just buying more time for the time being and i have to accept that. I can go back in 6 months down the road. No problem really. I have to be prepared for that too. I am prepared for both options honestly, as I've had a good 3 weeks to think.

Today marks another day. Krystal (or Special K) is departing in 2 hours for ICELAND! Yup...Tara's back from PoPo and now Krystals leaving for Iceland. Oh how I envy them! I am going to miss Krystal a lot, but, just like Tara's trip, Krystals will pass quickly too so that's good! Krystal if you read this (which you should! *glare*) i hope you have a safe trip! Meet some Puffins for me - YAY!

In other news, it's mild. It may actually storm today. That's exciting! The grass has appeared through the murkiness of the lawn - much like a swamp. I hope Howard is sleeping soundly and I cannot wait to see him when the spring comes.

That's about it for now. Not much to report. I've accomplished a lot today so i don't feel completely lazy. I just emptied out my binder from last semesters shit, i put new paper in my binders, organzied them, made an appt with an adivsor to update them on my medical status at school, called in my meds...and wrote a coverletter so we can mail our hotel receipt. I also washed my sweater.


Good for me!

Wednesday, January 2, 2008

New Years with a Bang!

Or a barf, I should say.

Many people at the party I attended spent the latter half of the evening/early portions of the morning barfing. Tara was afflicted with the flu and spent all night in comfy clothes, clutching a nearby toilet as us selfish party animals drank to our hearts content. I myself had 2 going at once:

Not the classiest moment but definately a shiny one for myself. 14 people were in attendence at Krystal and Tara's place and I can honestly say that I have never laughed so hard in my entire life. I actually at one point was laughing so hard that i had to stop so I could take ventolin. I truely beleived that if i kept laughing I probably would have stopped breathing or something. I took so many pictures and I'm truely glad that I did. I saw a lot of people that I hadn't seen in a while so it was a good time. There was so much food but I mostly stuck to the fruits and veggies.

For the majority of the night we sat on the kitchen floor. Why? I don't know, but i guess it was for the better b/c sometime after midnight our friend Mike passed out. He slouched over aned threw up all over himself so thank god it was linolium flooring and was easy to clean up (thanks Katey!). Somehow people managed to move Mike into the bathroom, where he slept, on the floor, for the rest of the night.

The morning saw Brent and Greg barfing. It was both disgusting and funny and I can we can honestly say we partied our hardest, laughed the loudest, and had the most fun we'd had in a long, long while. Over night we did get a lot of snow and I was really shocked when I woke up and went to my car to see this:

Yup, that's the Red Rocket burried in 5 inches of snow which accumulated that night. Laura and I left yesterday morning and thought we might not be able to back out it was so high. Some of the streets had yet to be plowed but alas, we made it! When i got in my car it was pitch black from all the snow and took a good 10 minutes to entirely clean the car off. Oh well, good times nonetheless!

So yes, I ended up spending the night at Krystal and Tara's (as did many people) and it was my first time since starting O2 that i slept without it. We retired to bed around 3ish but i didn't sleep. I guess i am truely depended on the good stuff bc I was awake from 3-6am. Laura was up at 6am, Greg was in the bathroom puking, so we decided to go upstairs to see who else was awake. Brent woke up when he rolled off the couch and Mike was still asleep on a towel on the bathroom floor. Eventually we figured out no one upstairs was gonna wake up any time soon so we went back to the basement where we slept till about 10. I felt ok when i woke up but once i got back to my house, i napped in the afternoon coz i was so tired. Lastnight I went to bed around 1am and slept soundly until 10:35 am! GO ME! However, when I woke up, i discovered one of our dogs had pissed infront of my door which angered me greatly.

That's all for now. Hope you all had a good New Years! Welcome 2008!